Thursday, January 2, 2014

The importance of philanthropy for funding cancer research in 2014+

I probably received no fewer than 25 emails  last week asking me to consider donating to a variety of charitable organizations before the stroke of midnight 12/31/13. “There’s still time for that end-of-the-year deduction.” **sigh** Every one of them, no doubt, is worthy, and most were from organizations I had some contact with in the past, either as a member, an alumnus, a prior donor, or some other connection. (The most amusing to me are the requests for donations from the colleges where my kids are currently students, frequently a request that comes by phone. I tell the earnest young men and women who are calling to “verify my address” that I already make regular donations, called tuition payments.)

It’s easy to tune out requests that come in waves at the end of the year, or if you are like me, you may have already made some decisions about where you might be willing to give. But did you know one of the worthiest causes you can donate to is cancer research, specifically to the hospitals and medical centers where you or your loved ones may already be receiving their care? Many people are surprised to find out that much research is funded not only by the Federal government and the pharmaceutical industry, but by donations large and small from grateful patients and family members. While most have heard that Federal dollars for biomedical research have have been drying up in recent years, you should realize how bleak the situation truly is. The American Society of Clinical Oncology (ASCO) has pointed out that the research budget from the National Institutes of Health is almost 25% lower today than 10 years ago when adjusted for inflation. This infographic explains the issue pretty well.

What can you do? I would of course support the idea that as citizens we should work through our elected representatives to send them the message that we can ill afford to continue to mortgage our future in this way, although realistically few of us may be motivated to do that. But you can also make a difference at the local level by donating directly to centers that are doing research and benefiting people in your own community. You don’t have to have millions or thousands or even hundreds. You might be surprised at how welcome and deeply appreciated even a seemingly modest donation to a local doctor or research program would be. Those of us who work in an academic medical center like Johns Hopkins are thrilled when we hear about people who want to help our work by supporting a small (or large) part of it financially. And here’s another thought - instead of remembering your oncologist or his/her office with a Christmas gift or donation of fruit or candy, consider making a donation to the research program that he or she is a part of. While I am always flattered and grateful when a patient buys me a tie or other thoughtful personal item, an even better gift is research support. It may not sound as personal or glamorous, but it is something that will long be remembered.

When I moved from private practice in Sacramento to Johns Hopkins in 2009, quite of few of my California patients wrote me moving personal notes, every one of which I kept. Others bought me small gifts or similar items, again things that I really appreciated and still have. But the one gift I will never forget was from the couple (the husband was one of my patients, and I took care of one of his wife’s family members as well) that donated money in my honor to Johns Hopkins, before I even started working here.  

So let make a very direct “pitch," and I'll be clear I am speaking as an individual,  not as a faculty member of Johns Hopkins University (my employer) or as Editor-in-Chief of ASCO’s Cancer.Net (where I volunteer). I would ask you to consider giving to support research by donating to two worthy causes - the Kimmel Cancer Center at Johns Hopkins and ASCO’s Conquer Cancer Foundation, which in addition to supporting Cancer.Net’s patient education and advocacy efforts, has long supported the careers of gifted physician-scientists by funding their research.

You can learn about opportunities to donate to the Kimmel Cancer Center here (consider designating that your gift be used for breast cancer research) or to the Conquer Cancer Foundation here. Thank you so much for your consideration.

2 comments:

  1. While your "pitch" is of course very laudable, as someone who spent much of my career as a research administration executive heading the research efforts of Canada's premier cancer charity, I am always leery of donations that go directly to hospitals, or med centers or worse, directly to researchers, *IF* that bypasses any form of formal, preferably peer, review. The public is in no position to be able to distinguish merit and import and feasibility etc from a good sales pitch.

    So I am OK with direct donations but only if the research being supported has been, or will be vetted in a formal, expert and arms' length process that ensures that only worthwhile projects are funded. This is especially important the more funds get scarce.

    Even Nobel laureates can sometimes go off the rails and propose a stinker of a project, so track record and reputation, while very important, are not sufficient to predict a quality project or program.

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  2. I appreciate your perspective and comments. I will say that I think that the scenario you describe may be possible but is not very likely. Trials involving human subjects are commonly approved by an institutional review board, recognizing that the primary purpose there is protection of participants and not peer review of the worthiness of the project. Ideally researchers should be directly informing donor about what their monies are being used for and providing regular progress reports. In addition, in many cases, investigator-initiated trials with local philanthropic funding are used for pilot projects, leading to larger projects that will receive peer-reviewed funding.

    I would also note that if a potential donor had any reservations about supporting a specific local research activity, money could instead be given to support cancer center clinical operations. Small (and large) donations to fund patient services (e.g., snacks in waiting areas) are always appreciated.

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